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Topic: Just diagnosed (Read 494 times) |
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mom2my3boyz
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Just diagnosed
« on: Feb 27th, 2008, 4:55pm » |
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I've suffered from severe headaches for 9 years now. I thought they were migraines. I've been on so many different meds over the years. I was on Topomax for about a year, but it really messed with me and didn't seem to help as much as I would have liked. I went to a different neurologist today since my last one went out of practice and he diagnosed me with cluster headaches. They did a treatment where they put anesthetic in my nose then gave me oxygen. I have to go back in a few days for 2 MRI's. I don't know much about cluster headaches, so I'm off to do some research. 
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barry_sword
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Re: Just diagnosed
« Reply #1 on: Feb 27th, 2008, 6:33pm » |
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Welcome. sorry you had to be here here but you are with others now who REALLY understand what you are going through.
Read all you can to the left and print off the info on the o2 and take to your Neuro. 100% o2 at 15 lpm with a non-rebreather mask, and get on it at the very first sign of an oncoming hit.
More will be along soon so nice to meet you and welcome to your new home.
Barry 
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Linda_Howell
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Re: Just diagnosed
« Reply #2 on: Feb 27th, 2008, 9:38pm » |
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Well he was correct in precribing 02 at least. Many here have an idiot called a Dr. who won't.
Your're right...keep reading.
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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BarbaraD
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Re: Just diagnosed
« Reply #3 on: Feb 28th, 2008, 7:21am » |
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Welcome to Clusterville. You're at the right place. some of us have been here for so long ... well we've grown roots.... , but we're here to help... and we know how you feel.
Ok, O2 is a great start. As Linda said 15 liters with a NON-rebreather mask (very important).
Other things:
Red Bull (energy drink) at the first sign of a CH. Chug-a-lug a can - it helps a lot of us.
Coffee helps a lot of us. I drink lots of it at the first sign of a shadow.
Melatonin (12-15mg) at night before bed. Helps you get thru the REM sleep and for a lot of us stops the night-time hits.
You didn't say what dose of topamax you were on. It's been my miracle drug. Keeps me sane (for the most part). My maintenance dose is 100mg and I take it at night with no side effects.
Verapamil and Lithium have worked great for others.
READ READ READ all you can on this site. It's filled with years of knowledge on CH. Take it to your new neuro. Be prepared to DISCUSS your condition with him armed with knowledge. You are your best advocate with this disease.
If you have questions, for goodness sakes ASK them. someone here can answer them. We've all been right where you are now. And when we say we understand, you can bet your bippy we DO.
Hugs BD
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Bob_Johnson
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Re: Just diagnosed
« Reply #4 on: Feb 28th, 2008, 7:59am » |
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It's useful to have your first learning be organized--that's why I suggest one of these books. Then, you can begin to make sense of the multitude of specific responses/treatments/etc. which you will find here.
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MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $50 at Amazon.Com. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book...."
HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
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Bob Johnson
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sandie99
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Re: Just diagnosed
« Reply #5 on: Feb 28th, 2008, 8:50am » |
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Warm welcome!
Lots of information about ch and lots of other sufferers and their supporters are always here.
Wishing you lots of PF days,
Sanna
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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Guiseppi
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Re: Just diagnosed
« Reply #6 on: Feb 28th, 2008, 10:11am » |
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You've already been flooded with great information. Do as much reading as you can, few doctors know a lot about CH, it's your job to learn everything you can to manage your treatment. We'll walk with you every step of the way, so glad you found us!
Guiseppi
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mummymac
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Re: Just diagnosed
« Reply #7 on: Feb 28th, 2008, 12:27pm » |
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on Feb 28th, 2008, 10:11am, Guiseppi wrote: We'll walk with you every step of the way, so glad you found us!
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Welcome, I hope you are making sense of so much new information on CH.
It is comments like this that make this place so special and what more these people mean it
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Tanya
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